A Sampling of Projects from the Health Data Initiative Forum

The Health Data Initiative Forum, known informally as the Health Datapalooza, is a showcase for innovative technology projects that use data in new ways to support public health, wellness and/or patient care. This year’s event, which took place on June 9 at the National Institutes of Health, was co-sponsored by the U.S. Department of Health & Human Services and the Institute of Medicine. Here are just a few of the more than 45 projects featured at this year’s Forum.

Physicians frequently expect asthma patients to keep detailed diaries about their symptoms, including when and where they need to use rescue inhalers. The Asthmapolis project aims to simplify this record keeping process for patients. GPS sensors are attached to the bottoms of inhalers. When a patient uses his or her inhaler, date and location information is sent to a central database. The patient can use an online or mobile application to track his or her own symptom history. Physicians can use the data to see which of their asthma patients need additional support. Public health officials and scientists can use aggregated data generated by Asthmapolis to help identify environmental triggers that need to be addressed.

PatientsLikeMe is a social network, online support group, and data sharing platform for people living with medical conditions. It was founded in 2004 by the brothers and friend of a man with ALS, and today there are more than 107,000 members. PatientsLikeMe recently introduced a Clinical Trials Tool which integrates data from ClinicalTrials.gov to match PatientsLikeMe users with trials for which they are qualified. An associated service helps trial recruiters find volunteers. PatientsLikeMe won a “Best of the Plenary” award at the Forum.

This ambitious GIS-based networking project is set to launch this summer. Community Commons will map out a wide range of community health projects and provide ways for leaders of those projects to communicate and share best practices. This project is backed by numerous major funding organizations including federal agencies and private foundations. The purpose is to help sustain successful projects by making it easier for project leaders to find resources and, conversely, to assist funding organizations in identifying projects that match their investment goals.

Two projects from the National Library of Medicine, MedlinePlus Connect and Pillbox, were also featured. MedlinePlus Connect provides a way to link quality consumer health information directly to an electronic health record or patient portal. The information is personalized through mapping to ICD-9, SNOMED CT and other standard codes. Pillbox brings together data from the FDA, MedlinePlus, and other sources to help users identify and learn more about unknown pills.

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